Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process
Abstract
:1. Introduction
- What is the concept of participatory research partnership in rehabilitation according to scientific studies?
- What is participatory research partnership within rehabilitation practices from participants’ perspectives?
- What does participatory research partnership in rehabilitation look like?
2. Materials and Methods
- What is participatory research partnership needed for?
- What knowledge and skills are needed in participatory research partnership?
- What enables success in participatory research partnership? How could the challenges be turned into success?
- What does participatory research partnership mean in practice: how could a participatory research partnership in applied research in rehabilitation be built?
3. Results
Establishing a relationship with partners |
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Organizing to support the partnership |
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Drawing up a research plan together |
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Doing research together in practice |
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Participatory reporting, utilisation of results and evaluation |
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“Collaboration already in the planning phase is central. The study topic should be interesting and emerge from both clinical work and everyday life of the clients”.
“I think that in participatory research partnership, stakeholders who should genuinely be involved need to be identified, and methods for their inclusion are determined together. This requires time and good communication skills to build trust and commitment throughout the process. Also, skills related to networking are needed”.
“The rehabilitee can, e.g., consider what meanings the results hold from the perspective of their own experiences, determining whether these results have value. Statistical expertise is not necessary, but a strong understanding of evaluating the results’ significance is useful”.
“Need to identify factors that promote and hinder achieving the goals in partnership”.
“Continuous evaluation that guides actions in partnership in real time, not just evaluating after the fact”.
“The model appears as a genuinely inclusive way of functioning, enabling participation, where all stakeholders are seen as equally important, without focusing on titles or professional roles. An interactive, dialogical approach is essential if genuine research partnership is desired, fostering a mutual trust-based approach to research collaboration”.
“In partnership, everyone gradually establishes their own position throughout the entire process, and this is openly discussed and openly structured in an equitable manner, with ethical considerations as a foundation”.
“A permissive and safe atmosphere, encompassing creativity, openness, and respect for others’ opinions, is central in partnership”.
“What is important is the opportunity to participate and the different ways to enable participation, to be able to realize active agency as part of the working group. Building equality is a fundamental aspect”.
4. Discussion
4.1. Findings and Their Implications
4.2. Methodological Limitations
4.3. Future Directions
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- Ministry of Social Affairs and Health. Rehabilitation. Available online: https://stm.fi/en/rehabilitation (accessed on 1 August 2023).
- Karhula, M.; Saukkonen, S.; Kinnunen, A.; Heiskanen, T.; Xiong, E.; Anttila, H. ICF—luokituksen yksilötekijöiden kuvaus on osa toimintakyvyn laaja-alaista arviointia: Kartoittava kirjallisuuskatsaus ICF-yksilötekijöitä käsittelevistä tutkimuksista. [The ICF personal factors are part of a comprehensive assessment of functioning—A scoping review of ICF personal factors in the rehabilitation studies. Kuntoutus 2021, 44, 9–24. (In Finnish) [Google Scholar] [CrossRef]
- Harrison, J.D.; Auerbach, A.D.; Anderson, W. Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities. Health Expect 2019, 22, 307–316. [Google Scholar] [CrossRef] [PubMed]
- Ketelaar, M.; Smits, D.W.; Meeteren, K.; Klem, M.; Alsem, M. Involvement of young people and families in all stages of research; what, why and how? In Participation, Optimizing Outcomes in Childhood-Onset Neuro-Disability; Imms, C., Green, D., Eds.; Mac Keith Press: London, UK, 2020; pp. 105–118. ISBN 978-1-911-61216-2. [Google Scholar]
- Lehtonen, K.; Vänskä, N.; Helenius, S.; Harra, T.; Sipari, S. Osallistuva tutkimuskumppanuus kuntoutuksen soveltavassa tutkimuksessa. Kuvaileva kirjallisuuskatsaus. [Participatory co-research in applied research in rehabilitation—A literature.]. Kuntoutus 2020, 43, 6–19. [Google Scholar] [CrossRef]
- Hoekstra, F.; Mrklas, K.J.; Khan, M.; McKay, R.C.; Vis-Dunbar, M.; Sibley, K.M.; Nguyen, T.; Graham, I.D.; SCI Guiding Principles Consensus Panel; Gainforth, H.L. A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: A first step in synthesising the research partnership literature. Health Res. Policy Syst. 2020, 18, 51. [Google Scholar] [CrossRef] [PubMed]
- Eitzel, M.V.; Cappadonna, J.L.; Santos-Lang, C.; Duerr, R.E.; Virapongse, A.; West, S.E.; Kyba, C.; Bowser, A.; Cooper, C.B.; Sforzi, A.; et al. Citizen Science Terminology Matters: Exploring Key Terms. Citiz. Sci. Theory Pract. 2017, 2, 1–20. [Google Scholar] [CrossRef]
- Kulmala, M.; Spišák, S.; Venäläinen, S. (Eds.) Kanssatutkimus: Ihanteet ja Käytännöt [Co-Research: Ideals and Practices]; Tampere University Press: Tampere, Finland, 2023; Available online: https://urn.fi/URN:ISBN:978-952-359-042-7 (accessed on 1 June 2023). (In Finnish)
- Lawson, H.A. Introducing participatory action research. In Participatory Action Research; Lawson, H.A., Caringi, J., Pyles, L., Jurkowski, J., Bozlak, C., Eds.; Oxford University Press: Oxford, UK, 2015; pp. 1–34. [Google Scholar]
- Domecq, J.P.; Prutsky, G.; Elraiyah, T.; Wang, Z.; Nabhan, M.; Shippee, N.; Brito, J.P.; Boehmer, K.; Hasan, R.; Firwana, B.; et al. Patient engagement in research: A systematic review. BMC Health Serv. Res. 2014, 14, 89. [Google Scholar] [CrossRef]
- Nind, M. What is Inclusive Research? Bloomsbury Academic Collections; Bloomsbury Publishing: London, UK, 2014; ISBN 978-1-7809-3851-6. [Google Scholar]
- Vaughn, L.M.; Jacquez, F. Participatory Research Methods—Choice Points in the Research Process. J. Particip. Res. Methods 2020, 1, 1–13. [Google Scholar] [CrossRef]
- Jennings, H.; Slade, M.; Bates, P.; Munday, E.; Toney, R. Best practice framework for Patient and Public Involvement (PPI) in collaborative data analysis of qualitative mental health research: Methodology development and refinement. BMC Psychiatry 2018, 18, 213. [Google Scholar] [CrossRef]
- Greenhalgh, T.; Hinton, L.; Finlay, T.; Macfarlane, A.; Fahy, N.; Clyde, B.; Chant, A. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expect. 2019, 22, 785–801. [Google Scholar] [CrossRef]
- INVOLVE, the National Institute for Health Research. Briefing Notes for Researchers. Available online: https://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf (accessed on 1 August 2023).
- NIHR (National Institute for Health and Care Research). Available online: https://www.nihr.ac.uk/ (accessed on 1 August 2023).
- Hoppania, H.-K.; Venäläinen, S. Kanssatutkimuksen tietoteoreettiset taustat [The Theoretical Background of Co-Research]. In Kanssatutkimus. Ihanteet ja Käytännöt. [Co-Research. Ideals and Practices]; Kulmala, M., Spišák, S., Venäläinen, S., Eds.; Tampere University Press: Tampere, Finland, 2023; pp. 32–46. Available online: https://urn.fi/URN:ISBN:978-952-359-042-7 (accessed on 1 June 2023). (In Finnish)
- Sipari, S.; Vänskä, N.; Lehtonen, K.; Helenius, S.; Väisänen, S.; Harra, T. Participatory Research Partnership in Rehabilitation; OIVA-Series 55; Metropolia University of Applied Sciences: Helsinki, Finland, 2022; Available online: https://urn.fi/URN:ISBN:978-952-328-342-8 (accessed on 10 June 2023).
- United Nations. United Nations of Human Rights 2016. Available online: https://www.un.org/en/about-us/universal-declaration-of-human-rights (accessed on 1 August 2023).
- Esmail, L.; Moore, E.; Rein, A. Evaluating patient and stakeholder engagement in research: Moving from theory to practice. J. Comp. Eff. Res. 2015, 4, 133–145. [Google Scholar] [CrossRef]
- Government of United Kingdom. UK Research and Development Roadmap. Available online: https://www.gov.uk/government/publications/uk-research-and-development-roadmap/uk-research-and-development-roadmap (accessed on 1 June 2023).
- Canadian Institutes of Health Research CIHR. Canada’s Strategy for Patient-Oriented Research Improving Health Outcomes through Evidence-Informed Care; Her Majesty the Queen in Right of Canada: Ottawa, ON, Canada, 2011; Available online: https://cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf (accessed on 17 May 2023).
- Skovlund, P.C.; Nielsen, B.K.; Thaysen, H.V.; Schmidt, H.; Finset, A.; Hansen, K.A.; Lomborg, K. The impact of patient involvement in research: A case study of the planning, conduct and dissemination of a clinical, controlled trial. Res. Involv. Engagem. 2020, 6, 43. [Google Scholar] [CrossRef]
- CanChild. Family Engagement. Available online: https://www.canchild.ca/en/research-in-practice/family-engagement (accessed on 1 June 2023).
- Van Schelven, F.; van der Meulen, E.; Kroeze, N.; Ketelaar, M.; Boeije, H. Patient and public involvement of young people with a chronic condition: Lessons learned and practical tips from a large participatory program. Res. Involv. Engagem. 2020, 6, 59. [Google Scholar] [CrossRef] [PubMed]
- Finnish National Board on Research Integrity TENK 4/2023. Available online: https://tenk.fi/sites/default/files/2023-05/RI_Guidelines_2023.pdf (accessed on 1 August 2023).
- Barbour, R. Doing focus groups. In The Sage Qualitative Research Kit; Flick, U., Ed.; Sage Publications: New York, NY, USA, 2007. [Google Scholar]
- Krueger, R.A.; Casey, M.A. Focus Groups: A Practical Guide for Applied Research, 5th ed.; Sage Publications: Los Angeles, CA, USA, 2015; pp. 1–7. ISBN 978-1-4833-6524-4. [Google Scholar]
- Elo, S.; Kääriäinen, M.; Kanste, O.; Pölkki, R.; Utriainen, K.; Kyngäs, H. Qualitative Content Analysis: A focus on trustworthiness. Sage Open 2014, 4, 1–10. [Google Scholar] [CrossRef]
- Israel, B.A.; Parker, E.A.; Rowe, Z.; Salvatore, A.; Minkler, M.; López, J.; Butz, A.; Mosley, A.; Coates, L.; Lambert, G.; et al. Community-based participatory research: Lessons learned from the Centers for Children’s Environmental Health and Disease Prevention Research. Environ. Health Perspect. 2005, 113, 1463–1471. [Google Scholar] [CrossRef] [PubMed]
- Berge, J.M.; Mendenhall, T.J.; Doherty, W.J. Using Community-based Participatory Research (CBPR) To Target Health Disparities in Families. Fam. Relat. 2009, 58, 475–488. [Google Scholar] [CrossRef]
- Gonzalez, M.; Ogourtsova, T.; Zerbo, A. Patient engagement in a national research network: Barriers, facilitators, and impacts. Res. Involv. Engagem. 2023, 9, 7. [Google Scholar] [CrossRef]
- Roberts, M.K.; Evans, A.E.; Willover, L.K.; Ehde, D.M.; Alschuler, K.N. Patient-Centered Framework for Rehabilitation Research in Outpatient Settings. Arch. Phys. Med. Rehabil. 2022, 103, 1684–1692. [Google Scholar] [CrossRef]
- Pozniak, K.; Buchanan, F.; Cross, A.; Crowson, J.; Galuppi, B.; Grahovac, D.; Gorter, J.W.; Hlyva, O.; Ketelaar, M.; Kraus de Camargo, O.; et al. Building a culture of engagement at a research centre for childhood disability. Res. Involv. Engagem. 2021, 7, 78. [Google Scholar] [CrossRef]
- Leavy, P. Introduction to The Oxford Handbook of Methods for Public Scholarship. In The Oxford Handbook of Methods for Public Scholarship; Leavy, P., Ed.; Oxford University Press: Oxford, MS, USA, 2019; pp. 3–16. ISBN 9780190274481. [Google Scholar]
- Young, R.; Sage, K.; Broom, D.; Broomfield, K.; Church, G.; Smith, C. Using nominal group technique to advance power assisted exercise equipment for people with stroke. Res. Involv. Engagem. 2021, 7, 68. [Google Scholar] [CrossRef]
- Camden, C.; Shikako-Thomas, K.; Nguyen, T.; Graham, E.; Thomas, A.; Sprung, J.; Morris, C.; Russell, D.J. Engaging stakeholders in rehabilitation research: A scoping review of strategies used in partnerships and evaluation of impacts. Disabil. Rehabil. 2015, 37, 1390–1400. [Google Scholar] [CrossRef]
- Järvikoski, A.; Martin, M.; Autti-Rämö, I.; Härkäpää, K. Shared agency and collaboration between the family and Professionals in medical rehabilitation of children with severe disabilities. Int. J. Rehabil. Res. 2013, 6, 30–37. [Google Scholar] [CrossRef] [PubMed]
- Harra, T.; Sipari, S.; Mäkinen, E. Hyvää tahtova kehittäjäkumppanuus. [A Well-Intentioned Developer Partnership]. In Asiakkaasta Kehittäjäksi ja Vaikuttajaksi. Asiakkaiden Osallisuuden Muutos Sosiaali—Ja Terveyspalveluissa. [From Client to Developer and Influencer. Transforming Client Participation in Social and Health Services]; Pohjola, A., Kairala, M., Lyly, H., Niskala, A., Eds.; Vastapaino: Tampere, Finland, 2017; pp. 147–164. ISBN 978-951-768-597-9. (In Finnish) [Google Scholar]
- Potvin, L.; Bisset, S.L.; Waltz, L. Participatory Action Research: Theoretical Perspectives on the Challenge in Research Action. In The Sage Handbook of Qualitative Methods in Health Research; Bourgeault, R., Dongwall, R., de Vries, R., Eds.; Sage Publications: London, UK, 2010; pp. 433–453. ISBN 9781847872920. [Google Scholar]
- McNiff, J. You and Your Action Research Project, 4th ed.; Routledge: London, UK, 2016; pp. 216–224. ISBN 978-1-138-91004-1. [Google Scholar]
Research Question | Phase of Process and Data Collection Design | Description of the Participants and/or Methods and Data | Action Research Cycle and Results |
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1. What is the concept of participatory research partnership in rehabilitation according to scientific studies? | The first phase: Studies published in English in scientific journals | Descriptive literature review: n = 17 articles, including n = 3 reviews and n = 14 original articles. | Planning of action: Version 1 of the model |
2. What is participatory research partnership in rehabilitation practices from participants’ perspectives? | The second phase: Workshops | n = 64 health care, social work and education professionals, teachers, students, researchers and developers; n = 5 focus group discussions in co-creation workshops; 30 pages of transcribed data. | Planning of action: Version 2 of the model |
3. What is participatory research partnership in rehabilitation like? | The third phase: Developmental training process | n = 50 participants: rehabilitees and their close ones and multidisciplinary professionals, researchers, developers, teachers; n = 5 remote training sessions including n = 6 focus group discussions in co-creation sessions; 38 pages of transcribed data; n = 65 developmental assignments; 255 pages of transcribed data. | Implementing the action and observation: Version 3 of the model |
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Sipari, S.; Vänskä, N.; Lehtonen, K.; Helenius, S.; Harra, T.; Kinnunen, A.; Väisänen, S.; Jeglinsky, I. Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process. Disabilities 2023, 3, 410-425. https://doi.org/10.3390/disabilities3030027
Sipari S, Vänskä N, Lehtonen K, Helenius S, Harra T, Kinnunen A, Väisänen S, Jeglinsky I. Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process. Disabilities. 2023; 3(3):410-425. https://doi.org/10.3390/disabilities3030027
Chicago/Turabian StyleSipari, Salla, Nea Vänskä, Krista Lehtonen, Sari Helenius, Toini Harra, Anu Kinnunen, Sara Väisänen, and Ira Jeglinsky. 2023. "Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process" Disabilities 3, no. 3: 410-425. https://doi.org/10.3390/disabilities3030027
APA StyleSipari, S., Vänskä, N., Lehtonen, K., Helenius, S., Harra, T., Kinnunen, A., Väisänen, S., & Jeglinsky, I. (2023). Participatory Research Partnership in Rehabilitation—Co-Development of a Model for Collaboration Process. Disabilities, 3(3), 410-425. https://doi.org/10.3390/disabilities3030027